Twirling my brains out

Stimming. Probably one of the most controversial of all autistic behaviours.

Man, people get upset about it.

On the one hand there’s ABA therapy which (as far as I’m aware) aims to analyse stimming behaviours and tries to modify or eliminate the ones that are classified as “non-functional” or “inappropriate” as much as possible. People saying that stimming means the autistic person can’t concentrate, or is not paying attention. Or that it makes others uncomfortable around the autistic person because it’s so obviously different. That to be accepted as “normal”, the stimming needs to be as unnoticeable as possible. That stimming makes autistic people the target of bullies.

On the other hand, there’s Autistic Pride. Loud Hands. The joy of stimming. The fact that it is a very effective way to self-regulate, especially when dealing with sensory processing issues or overwhelming emotions. The emerging notion that it actually helps autistic people with learning and getting better results in school. That trying to take away the coping mechanisms of the autistic person, increases the chances of a new coping mechanism popping up, one that might actually be more harmful because the autistic person couldn’t use a less harmful one to cope sooner. And the anger and pain that despite what others have said and maybe hoped for their autistic child, hiding or eliminating more obvious stims doesn’t truly help in getting accepted and not getting bullied.

Despite all the controversy, there’s still a lot of confusion over what stimming actually is.

When I first read about autism, I started looking at things in a new light. Things in my life that seemed to fit the description. I looked at experiences that I’d never linked together and suddenly things made sense to me. I was sure I was autistic.

But I was convinced I didn’t stim. It actually rather worried me, because I was afraid that without stims I wouldn’t be autistic enough to get diagnosed. Well, alright, I did have a tendency to get very bouncy when I was excited about something. But that’s not really stimming is it? Stimming is the flapping and the rocking, right?

And then I read somewhere that playing with your hair is a stim. And I thought, “Hey, I do that. A lot. Actually a whole lot. In fact, my mum was always telling me to leave my hair alone.” And then I read that Alyssa of Yes, That Too strokes the satin binding on her blanket as a stim. And I thought, “Mmm satin binding, that feels nice, I need to buy more stuff wi… Hang on. That’s stimming too? I do that.”

So. After reading that Alana of Sleep wake hope and then thought she didn’t stim either (hey, it’s not just me), I had this idea that maybe we need to put together a resource. A list showing all our unique ways of coping with our environment. A list that might help others recognise the same things in themselves.

Autistic people. But also neurotypical people.

Because everyone stims. And it’s so much more than just rocking.

If you think this is a great idea, please add your stimming behaviours to the list by filling in the survey above! It doesn’t matter if you’re autistic or not. They can be as normal or as odd as you like. The only criterium is that YOU feel it’s a stim. After filling in the form you will see a link to the survey answers so far. Who knows, maybe you’ll recognise some extra ones! In that case, no worries, you can fill in the survey as many times as you like.

I’m not entirely sure yet how I’m going to make the results permanently accessible, but I hope this will at least be an interesting start!

Edit: I’ve figured out how to link to the stimming survey results!

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54 thoughts on “Twirling my brains out

  1. This is SUCH A GOOD IDEA! Again, when I was first introduced to the idea of stimming, I didn’t think I stimmed. Now, I don’t know how I managed to not notice I was stimming! I tiptoe basically all the time, I pace around on my toes a lot (especially to music), I sing/hum/etc to myself (usually the same few lines over and over again), I lock my hands together and flick one middle finger against the other palm, I flap my hands sometimes, I sort of claw at my neck when I’m nervous, the list goes on!

    • Yes! There are so many! I notice that when I try to explain my stims, I sort of default to the happy ones. Maybe because they don’t sound scary but more childlike? I do actually have a lot of stims that make me feel happy. But there are nervous stims too, and anguished stims. And recently, I’ve wished non-stop that I could manage to stop jiggling my left leg because it’s making my thigh muscles sore. 😛

  2. This is a great post, and a great idea. Thanks so much! God, there are several I could add to that survey: flapping my hands; clapping when I get really happy; rocking back and forth; tapping my fingers and legs when I get really nervous…

  3. What an original idea! I’ve never seen a list of stims that covered more than a half dozen behaviors and to see nearly 100 up there… WOW!!! And I never realized how many things I do to stim: I’m sure I’m not even conscious of the majority. I think I’ll have to come back and add a few more to the survey every now and again 😉

  4. Such a great idea! I really do believe that increased understanding of and exposure to stims will lead to increased acceptance. As you mentioned, a lot of neurotypical people reading this list will find something of themselves in it too-I’ve known lots of people who tap their feet or drum their fingers. It’s one of those ways in which we’re more alike than we realize.

    • Thanks! It’s true that autistic people are far more involved in their stimming and do it more often, but I think that’s more a sign of how much trouble they have regulating sensory input. The stimming itself isn’t “abnormal” behaviour! We’re only different in our sensory processing.

      Saying that, although I sometimes wish I had better capabilities in coping with overwhelming sensory stuff, I wouldn’t want to become numb to the joys either. Like how GOOOOD things can smell, like flowers or the air after rain or PIE! And how visually stunning RAINBOWS are!

      • Mmmm!! Loving your images here: walking through a flower garden after the rain, a heady floral scent carries on the freshly washed air and my eyes are drawn from the sun-sparkle of drops on leaves and petals up to the broad sweep of bright colors that rises from the horizon before me like a bridge to the heavens. Ooh! Shiny!!! I may be smiling for the next hour at least. (Oh, and if I were to be eating a pie at the same time that would just crown a stunning experience!)

  5. Pingback: You Gotta Stim When the Spirit Says Stim | aspermama

    • Isn’t it! 😀

      I’m trying to get the word out, to get even more stims on the list. It would be amazing to have this library of hundreds or even thousands of different stims. Ambitious? Me? 😉

  6. I stim in a lot of ways, but th most noticeable is twirling my hair. I remember the psychologist who diagnosed me with autism said this was the second most important thing to unlearn, after meltdowns. I bet he’s clueless about how many NTs stim. Case in point, I ws once at a college tour seeing if I liked particular program, and the students were roleplaying a scenario commonly encountered in the field the program was about. First, the students did it the “right” way and hten the “worng” way (ie. unempathetic comments etc.). I noticed that at the “right’ roleplay, the student modeling appropriate behavior was constantly clicking his ballpen. That’s stimming too and it wasn’t part of the act.

    • Unlearn? Oh man. That implies it’s a learned behaviour to begin with. I don’t think anyone showed me how to flap my knees when I was a child. Really.

      I know so many people who constantly click or tap their pens. Stimming is in the eye of the beholder!

    • Thanks! I just love reading the ever expanding list. There’s so many awesome ones! But also “socially inappropriate” ones which I think are really important as well.

  7. So many!
    Such a lovely list!
    So many possible ways to categorize things!

    Lists lists lists lists lists. I love lists.

    (And I’ve been telling people about it so they can add to it and make it even longer and more wonderful!)

  8. I just have to use the same color and type of clothespins for drying my clothes. Does that count as stimming? And to make it worse – my wife has bought several different kinds and colors, ON PURPOSE. And! she switches them every now and then, just to see me ordering them again.

    • I like the idea of sorting clothes pegs by colour! Do you think it’s something that soothes you or is it more of a compulsion (OCD)? Having to use a particular type and colour sounds more like the latter. And your wife is very sadistic. 😛

  9. this is a question i’ve never been able to answer. i will definitely take this survey, curious to see the results, thx so much for putting this all together. i was diagnosed as asperger’s…now autism spectrum disorder…without having any stims that i was aware of. i’ve never been able to identify anything specific…most of my spectrum traits were related to difficulties with social processing, and some sensory issues…stimming was always something i never understood, and when reading about it, had the same experience you had, basically discovering it was controversial (although i’m firmly in favor of the belief that it is natural, beneficial)…but not stimming myself, it’s not an issue i’ve studied further. so, i’ll take this, we’ll see what happens. thx again, great post.

    • I think it might be because the mental health professionals pathologise it so heavily, always looking to see if behaviours pose a problem (a friend of mine had an occupational therapist say about her son, “Well, at least he’s not like THAT”, meaning banging his head and chewing on everything in sight). It has to be visibly and notably “different” to be called stimming, and they always mean it in a negative, “this is why you’re excluded from society” sort of way.

      Well, of course I don’t do any stimming then. If I did, someone would have said something. Nobody has ever excluded me for things like that.

      And then you start reading blogs by other autistic adults and you come across other types of stims and you think to yourself “hey wait a minute…” and it’s none of it negative, it’s just a part of who you are. And the list gets longer and longer.

      And that’s why I wanted to include all types of stims here, even the things that nobody thinks are “all that bad”, like tapping your foot. That’s the point. It’s normal human behaviour. The only difference, if you will, is that stimming in autistic people is often a bit more frequent and/or intense, and it’s harder for the autistic person to stop doing it, because they need the sensory regulation so badly. But the difference is not in the stim itself. I think everyone will recognise some of the things on the list.

  10. Pingback: The stimlist needs your help | autisticook

  11. Pingback: My Turn to Reblog the Stim List | Notes On Crazy

    • I found the article you mentioned and I’m going to address it here first, if you don’t mind. First of all, I do like the writer’s summary of possible causes and possible results. It’s a very concise and clear overview of the kind of behaviours we’re dealing with. It also gives a good starting point for dealing with behaviours that are potentially harmful to the person or to the people around them.

      What I don’t agree with is the assumption that people who speak out against the idea of stimming being intrinsically harmful must be high-functioning.

      The people who are making statements like these presumably have a diagnosis of autism and know how their personal stims affect their daily lives. I might think that they take an extremely shallow view of stimming and what it is like for people who aren’t quite so high functioning but I don’t like to nitpick what people with a disability say about their disability. Especially since a lack of understanding of what others are thinking or experiencing is a large part of the disorder that they are struggling with.

      OK, let’s tackle that last sentence first. Saying that I don’t understand what stimming can be like for others BECAUSE OF MY AUTISM is something incredibly hurtful to say. It discounts my perspective and my experiences and any advice I might give based on those things, before I’ve even opened my mouth. Because I’m too autistic to understand others. But I’m also too high-functioning to know that stimming can cause harm? There’s no way for me to get heard here.

      (And saying he doesn’t want to nitpick at the end of a couple of sentences that do exactly that? Hm.)

      What I also don’t agree with is the assumption that some stims intrinsically interfere with the person’s ability to function or learn. He gives the example of a child who “has to constantly move about the room and scream” and claims that this interferes with their ability to function in the classroom. I disagree. Constantly moving and screaming upsets the teacher, it upsets the other children, so on that basis you can try and redirect it, BUT IT DOES NOT HARM OR DISTRACT THE PERSON THEMSELVES. There is absolutely zero proof of that. All the proof points to the exact opposite, that by not having to spend energy and processing power trying to SUPPRESS the stim (which is far more distracting and anxiety inducing than indulging in stimming), autistic people are able to concentrate and learn a lot better.

      I also don’t like the overall sarcasm. The language he uses is very condescending. “So hyperbolic that it would be funny if it weren’t so sad”. “Mean parents like myself”. Oh wait, I’m autistic, so I’m not supposed to understand sarcasm. (That’s a sarcastic sentence). Oops! My bad! (That’s a sarcastic exclamation).

      Finally, what bothers me the most is that he doesn’t pay any attention to the notion that suppressing RELATIVELY harmless stims like “push on their chins with the palm of their hands” may actually LEAD to more intense stims like “slamming their palm into their chin” because the person is prevented from self-regulating when whatever’s bothering them is still at a manageable level. THIS is what most autistic advocates are trying to address. Let us fiddle with our hair, don’t tell us to sit still or stop bouncing, don’t imply that our hums and flaps are what makes the other kids bully us, allow us to fidget at the dinner table if that is what enables us to actually EAT our dinner. Because having to suppress all those things INCREASES the sensory overload or anxiety or craving of sensations that we’re trying to deal with. He doesn’t address that at all, which might give parents and caretakers the idea that they’re helping us when they teach us how to “manage” stims and how to not let those stims “control” us. It’s not helping at all.

      He’s right to mention that not every stim is harmless (in fact, there are a few on the list that can be characterised as self-injurious), but by the way he’s talking about it, he’s the only one saying truly harmful things here.

      • Hi,

        Since I wrote the post you are commenting on I would make a few responses, if I may.

        First, the point of the statement about lack of understanding other people’s point of view was not meant to be a hurtful one but rather one that reflected what actually happens. And, at the risk of offending again, your responses to my examples are exactly what I am talking about.

        The thing that I didn’t’ explicitly say in the post but I thought was implied was that the most of the examples I used are actually things that my daughters do. So the screaming and running in class, that’s my youngest.

        So these statements – “BUT IT DOES NOT HARM OR DISTRACT THE PERSON THEMSELVES. There is absolutely zero proof of that.” are just wrong.

        I have seen this exact behavior in my child. I have, along with my wife, a special education teacher, an aide, and a BSC taken the time to look at the behavior, the situation around it, what triggers the behavior, and what the impact on her is. Even though my daughter can’t articulate why she is doing what she is doing I think we have a pretty good idea of what exactly it does for her and why she is doing it.

        So the short answer is yes, it does prevent her from learning. The “proof” is the combined opinion of five people who are all highly qualified to make a judgement on the actions of this particular child with autism. And yet you obviously think that analysis is wrong and that you know better? I would be interested in understanding exactly why you think I am wrong.

        Second, I don’t believe that I said anything about people with autism not understanding sarcasm. And yes, I am sarcastic, but having been called far worse than a “mean parent” many, many times, I think I am entitled to the sarcasm.

        Third, and maybe I didn’t say this explicitly, I don’t think suppressing “relatively” harmless stims is a good idea. We certainly don’t as long the stim isn’t something that needs to be addressed per the other ideas in my post.

        But here again, and this is me possibly offending again, the idea that pushing on the chin is relatively harmless is wrong and again the reason is in the details. As I said in the post, the pushing on the chins is a stress reaction that can quickly escalate in slamming the palm in the chin.

        Behaviors that lead to SIBs are never even relatively harmless and need to be stopped. In this case we redirect the behavior and try to give them other outlets to deal with stress that don’t involve hurting themselves.

        And yet again you seem to think that you know better and call out the behavior as “relatively harmless” and say that we are wrong to suppress the stim. How can you possibly know whether the particular stim is relatively harmless without knowing anything about the people who have the stim or understanding the cause of the stim?

        • “How can you possibly know whether the particular stim is relatively harmless without knowing anything about the people who have the stim or understanding the cause of the stim?”

          You’ve got a good point here. No one can know the potential harm without information about the person stimming or the cause of the stim. But I really don’t think autisticook was trying to claim that your daughters’ stims are harmless. She was not addressing you directly, she was explaining why she does not feel your article to be a good overall look at stimming.

          Further, I’m in disbelief that you could end your comment with such a clear message of each unique individual, each unique stim, and each unique cause of stimming being of utmost importance to understanding how to deal with the behaviors, but focusing your article as well as your comment here on accusations of lacking empathy. No one, including this blogger, has told you that the correct way to parent is to let your children hurt themselves or otherwise prevent them from coping, learning, or daily functioning. This blogger, as well as the two bloggers you quote in your article and so many more autistic bloggers who have addressed this issue, are interested in spreading the message that stimming – whether is harmless or not – has a purpose. We celebrate those stims that let us live our lives more fully, that allow us to cope and learn and function daily. No one is accusing you of child abuse when you stop your child from walking into the street or from damaging their bodies, but it is more than a little unempathetic of you to mock (in your post) a blogger who does feel like she was abused and experienced trauma, since she is a person who is fully capable of understanding what that means and does not try to accuse, but instead spread a message. At the center of what she says was traumatic for her is the emotional damage from not being heard or understood. How can it help anyone for you to quote her in a post where you all but say “I’m not listening.”

          And despite your insistence that we do not understand the cause of your children’s stimming (and of course we don’t know your children, so no, we can’t know those causes and don’t claim to), there is a glaring omission of addressing causality in both your article and your comment here. I’m willing to bet you are a fantastic parent and you know exactly what causes your children to stim and I’m willing to bet you do anything you possibly can to make their lives better, easier, and more fulfilling. I can’t accuse you of being a “mean parent” because I honestly doubt that you are one, but let me at least warn you that when you omit this information it triggers a reaction in this community. We cannot help but worry that your children aren’t getting help for whatever is at the root of their stim instead of just getting it redirected over and over and over until they hit on a “relatively harmless” behavior that may not be adequate to satisfy their needs. Like I said, none of us have reason to believe you are a horrible parent who doesn’t want or try to help your children. But we (and maybe I don’t speak for all of us but I certainly speak for some) would appreciate a little empathy on your end, too, as well try to explain what our experiences are like and wonder if you can’t learn something from us the same way we can learn something from you.

        • Notesoncrazy,

          Please allow me to clarify, I am not implying a lack of empathy. Empathy involves a lot of things besides just an understanding another person’s thoughts or perspective.

          What I am talking about is what seems to be a built-in presumption that when you see a similar situation that you might not recognize that it is in fact quite different than expected. To put that a different way, there seems to be a built in bias to pay more attention to the bits that are as expected and a tendency to overlook things that aren’t.

          So go back to Autisticook’s comment when she said that there is no proof that running around the classroom and screaming distracts or harms the person who is stimming. She was presumably looking to her own experiences and what she knows about stimming. But she also, again presumably, overlooked that the example was predicated on a real life situation that does not mirror her own thoughts on the matter.

          The categorical “absolutely zero proof of that” hints at her missing the possibility that things might not be as expected. But I wasn’t sure I was reading that right which was why I asked what for clarification on whether we were in fact disagreeing.

          I do have one question for you though. You said that I didn’t address causality, i.e. why the stimming occurs. I thought I listed five different things that I thought were common causes and acknowledged that there were other reasons. What bit of causality do you think that I did not include?

        • Just a quick note to say that I use “zero proof” to mean that there is no scientific evidence that says that stereotypies or repetitive behaviours cause the person to be distracted, instead of being a physical response to the person already feeling distracted, or even not causally connected at all. If you know of a peer reviewed article in a publication with a high academic Impact Factor and a basis in neuroscience, then I’d really and honestly appreciate it!

        • That is a rather interesting standard of proof for a question that is unlikely to have ever been researched. How easily can you scientifically prove that anything caused any person to be distracted in an uncontrolled environment in a generalized way?

          In children with autism who have an extremely wide range of responses to everyday situations it would be almost impossible to reach this standard with any behavior, especially if the child was only minimally verbal. How would you even measure if the child was distracted at all to start with when the conventional measures of attention don’t typically work?

          Which is why you fall back on a subjective analysis that is based on their individual situation by people who know the individual well. But that sort of analysis would never get published except as possibly as a case study.

  12. Pingback: Lists on Lists and Lists of Lists | Notes On Crazy

  13. Pingback: Stimming Survey | tagAught

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  15. Pingback: Caring For An Autistic Child - Parenting And Mental Health

  16. This is such a great post, and thank you for putting together a list!! I submitted some of my main “go-tos”, but I wanted to put one in the comments that I think could help others who might have an active hand/hands like myself during public/professional situations. I always have at least one tube of chapstick on me, and I’m constantly playing with, spinning, etc. it with my right hand. It works really great for school,speaking, driving, or pretty much anytime, because it’s not large and noisy like a pen, and I can do it with my hand under a desk, at my side, etc. and it’s basically unnoticeable/unobtrusive for when you need to do it, but also should be mindful of not distracting others. I hope somebody else can get as much from that as I have/do : D

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